Alzheimer's: a mind in play

As one of Moms caretakers I have found that my mind often wanders off, reflecting on the years before we lost her. I find myself thinking about all the signs along the way. Much of Moms stuff, packed by her, in boxes labeled, “good junk” has landed at our house. Yes, Mom marked things “good junk.” Whenever she had something that she wasn’t sure of keeping or discarding got set aside in boxes called “good junk” on the assumption that one day she would need it again. Much of that junk appears to be things she thought might be useful for a future gift for someone else.

Like my daughter, Tracy, along with myself, Mom was always on the lookout for “stuff” that she could set aside to give away at some future time.  Mom was a treasure hunter. One of her plastic storage boxes contained Christmas gifts, while another had children’s gifts. A third box held childhood memories and many letters, cards and notes. Mom loved boxes. She introduced me to banana boxes, the kind you go to the grocery store to get. She liked anything that you could use to fill up, put on top of one another or use for storage. As a kindergarten teacher she collected boxes to organize with.

In looking back, I can see Mom playing with her boxes. She would go through them and reorganize. Mom spent hours in her boxes. She would line them up in her bedroom, move them around and pile them up one top of another. She’d move them into straight, orderly lines and methodically rearrange the content within them.  Once done, she would begin again, stretching her mind to accomplish yet a better system. She might remove a few items and transfer them into Ziploc baggies or put a rubber band around a handful of rulers, pens and small pieces of paper, only to return them to a box yet more organized.  

Imagine an early childhood kindergarten teacher with Alzheimer’s. Compulsive, repetitive, childlike…

Alzheimer’s is visual to those who are watching. The signs along the way can leave us with smiles or sadness. They each bear witness to a mind in isolated wonder.

If asked, Mom would smile and explain what she was doing. Her tasks were a total joy to her, 3 to 4 years before we lost her. Mom’s explanations were not easily understood, since she was obviously losing her language skills, but if you were lucky enough to witness her “fun," then you would just hug her as though you understood.

 It wasn’t until the fall of 2011, about 18 to 17 months before we lost her that I noticed her anxiety level raise when attending to her boxes. That fall, Mom seemed to be going through all she owned in her boxes and play things, like she knew this was her last hurrah. I would watch her and attempt to help. When I’d suggest a way to do something she often rejected it. If she was overwhelmed, I would offer to take care of a box. Sometimes she would allow me to bring one home. She would silently think it out and then say that it was a good idea. Mom had boxes full of old pictures and photo albums.  I think she knew they needed safe keeping. In one box I came across a beautiful picture of Mom when she was younger, but it had a tear in it. I asked Mom if I could gently tape the back so it wouldn’t get worse. Mom told me, "no." She was nervous I’d make it worse. Later, she told me to go ahead and attend to the picture with tape. It took her time to comprehend that I wanted to preserve, not harm her picture.

Mom did all this box work that fall in her front porch, right beside the living room. She had an idea about making this area “hers.”

One day, out of nowhere, Mom abruptly stopped all of her organizing. Many with Alzheimer’s suddenly just stop what they are doing. They never return to it again. It’s like watching a connection end, or a light go out…and not turn back on. Once Mom was done, she only looked back from her sitting position on the couch in the living room. She would look into the porch as though seeing something undone, which it was. Dad and I didn’t touch anything of hers that she left unfinished. We left it alone, since it was all her special belongings and it was her room. Mom could look and see herself as in a mirror as it were...she could see her boxes, her books, her knickknacks, paper pieces and notes tapped to the wall or bookshelves.  Occasionally she would walk in and touch something or move it. Only simple things, not the heavy mental organizing she had loved for years…I can still see her eyes lovingly staring into her past, pulling it close to her heart.

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